Justin's battle with Lemierre's Syndrome: June 2008

Tuesday, June 24, 2008

Happy birthday dad!

Today is my dad's birthday! HAPPY BIRTHDAY DAD! I won't tell you all how old he is, I don't want to embarrass him. ;0)
I want to say a personal thank you to Caitlin. She emailed my self and my mom letting us know she had Lemierre's syndrome 2 years ago. From what it sounds like she went through everything Justin did, life support and everything. Thank you for sharing your story with us Caitlin and thank you very much for helping us get the word out about this nasty disease!

Also My uncle Greg told me that Kay Quinn (the Healthbeat lady from news channel 5 here in St. Louis) sent a message to my Uncle Tim and is researching Lemierre's and is looking at possibly doing a story on it and Justin!!!!!!!!!! That would be amazing. I read an article yesterday from 2004 that talked about Lemierre's and how it is on a rise. So for 5 years its been on a rise, then how come 95% of the people that come to Justin's website have never heard of it. We are making a difference thanks to ALL OF YOU!!! Please don't ever give up and stop talking about Justin and this nasty disease that took him from us! I know My family and I won't!
Luv, Tammy

Monday, June 23, 2008

3 More Stories

This is really frustrating to me. This disease is obviously not as rare as researchers think anymore. I know I have said this a million times and I will say it a million more until the right person listens to me! I have had 3 cases emailed to me over the weekend!!! They all left comments on the other posts so check it out. Since I began this site 1 week after Justin passed (4 weeks ago) I have had close to 20 stories emailed to me of Lemierre's Syndrome. 20 that all happened in the last 3 years. So WHY are researchers saying 120 cases in 100 years!!! I am happy to hear that 90% of the cases I have heard about the patients have lived but it breaks my heart that my little brother didn't. I don't understand why him and this other teenager didn't make it? What made their cases so different. I've heard people say "the doctors have to catch it in time". I really believe the Dr's caught it in time in Justin's case. Or so I thought. All the other cases sound just like Justin's. One case I read about the young man had symptoms for a month, then finally they figured out what he had. I don't get it, a month and he still came out OK. This just goes to show how strange and unpredictable this disease is. I think one of the MAIN problems with diagnosing this disease is the time it takes to diagnose it. From what I have heard they have to let the bacteria grow in a dish type thing then slowly add antibiotics to it to see how it reacts. And I believe this all takes around 3 - 4 days.. Again I'm not a medical expert by any means so I could be wrong, but this is becoming less RARE there has to be a blood test that can be done or something to that nature to diagnose this horrible disease faster. I think the awareness we are doing here is working but it is so hard to hear of all these cases and still researchers say its rare. How many teenagers or young adults does this disease have to hurt or take from us before the big Doctors and researchers take the word RARE away from the description of Lemierre's Syndrome. I really do believe this one little 4 letter word "RARE" is hurting our awareness efforts. When a Doctor or nurse hears the word RARE they most likely think to them self "well if it is rare then this person most likely doesn't have it". I COULD BE WRONG but deep in my heart I don't think I am. I have now stopped myself from saying the word rare when explaining Lemierre's Syndrome. I consider winning the lottery rare but not a disease that is really harmful to our sons, daughters, sisters, brothers, nieces, nephews, friends, cousins, or enemies. This is no longer a RARE disease in my vocabulary or on this website.
Thanks for listening!
Tammy

Friday, June 20, 2008

Stats

I added a stat counter to our page down below the BIO I added for Justin. Its really neat, It tells us how many loads our page gets everyday. It also tells us out of those page loads who is re-occurring that day and who is new. Check it out I think between yesterday and just this morning we have had 83 page loads!
Today is Chrissy's Birthday!!! Happy 22nd Birthday Chrissy! June is a month full of Birthdays! Mine was the 5th , Chrissy's is today and my dad's is Tues the 24th. And Father's day was last weekend. This has been a hard month to get through but we can do it! It really brings comfort to me and the rest of my family when people tell us how they are going to tell their Doctors and pass along this website to everyone they know!
I have had a few people tell me how scary this disease sounds. It is scary and people should be scared of it, but if we can demand to doctors that our children be tested through blood instead of a swap in the throat we may just be able to save lives. I'm not sure if that is what it is going to take or not. All I know is I want everyone to know the name Lemierre and know that it hurts and kills young healthy (or not healthy) adults and teenagers! I was so upset when I went to the Dr myself and asked her if she had heard of Lemierre and she said no! But then I have heard lots and lots of Doctors and Nurses have never heard of it. I want to change that, I want them to know what it is and what it looks like and if they ever find a patient with it to send them straight to the hospital! Most cases I read about the patient is in and out of the ER or Doctors office at least 5 - 15 times before they figure out what it is they really have! To me that is just insane! When they couldn't figure out what Justin had I was getting so mad and aggravated! He had a temp of 103 - 105 for over a week before they figured out what it was! I kept thinking this is 2008 they should be able to figure out what a person has faster then this. But this bacteria is so sneaky and from what I've heard can grow with out oxygen. I don't know much about medical things at all but from what I read this is a really hard disease to diagnose. Please, please urge your doctor to learn more about this disease!

Monday, June 16, 2008

Father's Day

I want to wish all the Father's a Happy belated Father's Day.
I haven't been able to publish a post because I kept getting an error message on my computer.
Anyway Happy Father's Day to all those wonderful Fathers out there. Including mine!

We missed Justin very much on this day. We did go visit him and got some great ideas for his headstone and burial site.
I have had some great emails coming my way from people passing along this website and awareness in general. We are close to having 300 votes on the website for the top poll, I think that's pretty darn good for only having this website up and going for 3 weeks.
My Uncle Greg and I posted Blogs on KSDK.com and he received a reply from Kay Quinn saying Lemierre's sounds like a very interesting story and she will look into it. I also had some people email me saying they have connections with channel 4 news, SLU & Barnes Hospital. We are all doing a great job here and hopefully we can beat this horrible disease and not let it hurt anyone elses family!
Thank you again!
Love,
Justin's Family

Friday, June 13, 2008

One month

Well it has been one month since Justin was taken from us because of this horrible nasty disease. I first off have to say a huge Thank you to everyone that is thinking of us and praying for us (Justin's friends and family) it really does help in times like this! Everyday I get 2 or 3 new posts of people I don't know nor does my family telling us how sorry they are for our loss and that they are thinking and praying for us and myself and my family has to say THANK YOU!! I'm really happy about how much traffic this website has gotten. It looks like everyday I have 10 - 20 new votes on the top poll. A friend of the family said she is going to work on getting us a logo started for this awareness. We can put it on T Shirts and all sorts of stuff to get the word out. My mom talked with A Doctor that has been researching sore throats for a really long time. He asked my mom if he could use Justin's story when trying to teach other Doctors that a sore throat is not just a simple sore throat it could be much much more.

I've learned so much in the last month about this disease and how MIS diagnosed Strep Throat is. I believe this to be like Cancer. Doctors are not exactly sure how people get cancer we just know they do and some survive and some don't. That is how I feel about this disease but I think this disease hits you a lot faster. We found out Justin had it and within 3 weeks of knowing what it is he passed away. And we never got to say goodbye and Justin never knew that is what he had. Cancer patients most of the time have months to try to fight and when the worst comes of it they say their goodbyes and they know what took them away. In my eyes this needs awareness just like cancer. I again emailed Oprah and some others about this story. In the next couple weeks I am going to type up a generic letter about Lemierre's and maybe send 4 or 5 letters out a week to doctors I find online. If you would like a copy of this letter to send to your Doctor or Doctor's in your area just send me an email.
Thank you again for all your LOVE, SUPPORT AND PRAYERS!

Tuesday, June 10, 2008

Cards and Ribbons

Sorry I haven't posted in awhile Google would not let me log in.. Kept saying wrong email address. Oh well.....
I passed out cards to family and friends I have seen over the weekend and so has my mom. Everyone seems to love the idea. My cousin Sara made Ribbons to sell at her school and also to people at the hospital while Justin was in the PICU. She came by my mom's the other day and dropped off a whole bunch she made. If anyone is interested in some please email me and let me know. They are blue with Justin's name written in silver. They are $1.00 a piece. I can mail them to you and you can mail me a check or what ever works for you. The coffee shop in Eureka also told my Uncle Tim that we could set up some information there about Lemierre's and Justin's story.
I have now emailed; Oprah, Regis and Kelly, Ellen, Tyra, Mike and Juliet, all the news channels, Discovery Health and many more TV shows. My Uncle's friend posted the article on a Blog on News channel 2's website. It got a lot of comments. People are just shocked that Dr's do not know about this disease. I actually googled "Misdiagnosed Strep Throat" yesterday and so many things came up. There is actually a website called www.wrongdiagnosis.com !!!! I understand Dr's make mistakes (they are only human) but it just seems that every story I read they either didn't do a throat culture or they did but they didn't send it out to be looked at. Also I found a website called Sciencedirect.com I found some interesting articles about Lemierre's there too. One of them came from Australia and it was a warning to all ICU and ER nurses letting them know Lemierre's is making a big come back and what to look for. Another was urging Physicians to do blood work for sore throat patients and making sure they monitor them more. These were both written around 2006.
We have gotten a lot of responses from the news article!! I guess I will just keep on emailing until someone will listen. Maybe I'll start mailing letters and calling too.

Wednesday, June 4, 2008

Justin's News Article

My mom just called and told me Justin's story made it out today in the West Magazine in the Rockwood area. I copied the article from the site and put it towards the bottom of this page.

My Cousin Jessica had a GREAT idea!!! It was to email or mail letters to all the University Hospital's around the US. I googled University Hospitals and already sent 7 emails. So far I hit SLU, Upstate NY, Cincinnati OH, Cleveland, and TX. I think I sent 5 emails to different people at Upstate NY. My goal is to try to send out 5 emails every other day to different people at different University Hospitals.

Thank you for helping me spread the word! Who knows we may have already saved a life! I had someone tell me they know someone whose teenager was sick with a sore throat and the Dr couldn't figure out what they had. That person sent them to my website. And my mom had someone do the same thing. If we have saved 1 or 2 lives from this website and its only been 2 weeks, can you imagine what will happen if we keep this up!! Its going to take a lot of people and a lot of time to bring awareness to this illness but I know we can do it!

Love to all, Tammy

Monday, June 2, 2008

Justin's news article in the West Magazine

This was taken from http://www.westnewsmagazine.com/news02.html

Rockwood student dies rapidly from little-known disease
By Diane Plattner

In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.